[Unable to display image]Sunday, February 26
Posted 3 hours agoWe are delighted to share with you all the latest news from Jonas's mid-treatment scans. The tumor is greatly diminished! In some places (because the tumor is not spherical) the tumor has shrunk as much as 50%! The test findings also show that the cancer has not metastasized anywhere else in his body. Not to the lungs or the bones. They are so certain of this that they are skipping one of the major scans altogether. Woo-Hoo!!! This means that the protocol is doing exactly what it should be doing and that we don't have to make any changes to his course of treatment. Just stay the course. That is music to our ears. And as you can imagine, Jonas is ecstatic. (He's so happy, he's playing video games on the xbox today for the first time in weeks! Even got back on Facebook last night.) After several weeks of battling infections and worrying endlessly, we are due for a breather. You might not know it, but there is a fairly large percentage of kids with cancer that die of infection rather than the cancer. So we are more than happy to get that behind us.
Jonas made it through last week's 5 days of chemo like a charm. The day before he was admitted, Grandpa came to visit us in Kansas City with Valentine's goodies and another generous donation from his lunch bunch. (A big shout out to you all in St. Louis -- I love you guys and hope to see you at Grandpa's party this summer. I hope to scoop you all an extra helping of brownies and homemade ice cream.) Anyway, that set us off for cheerfully for a week at the hospital. (Love you, Dad xoxo) This was the most tolerant his body has been of the five day protocol yet. Jonas was very nauseous and weak through his stay, but he didn't vomit once....which is a very big feat. The first two days we were there we shared a room with another 13 year old boy. Sharing a room is never the most comfortable way to be hospitalized, but in truth there is always something to be learned in it. Jonas learned that his own prognosis looks better and better and we are in a place where we can still see light at the end of the tunnel, when others aren't. Some people don't even have that hope to hang onto. Jonas and I talked about that country song Live Like You Were Dying and about doing things you think are important. I asked him what was important to him --something that he feel he is really missing out on. Without missing a beat he said, "Playing my bass."
Jonas has played the stand-up bass since 4th grade with Mrs. Doss at Woodland. Rick Willoughby was his private instructor and Mr. Morales leads the orchestra at PLMS. (All three have made such an impact on him.. ) He hasn't been able to play since he got cancer for very many reasons. First of all, he hasn't felt well enough to manage it. Secondly, he has very little fat on his fingers and the wire strings hurt to hold them down. And lastly, he could play an instrument from his hospital bed, but a big bass viol is too big and heavy and not convenient for transport. I asked him if he might like to look into playing the bass guitar. I think the strings and fingerings are the same, the instrument is more portable, and I know guitars can use nylon strings -- which might not hurt him as much. Again, without hesitation he said yes.
After we left the hospital, we stopped by Legacy Music in Lee's Summit. John and Kim Ostlund were so kind. They showed us several basses and let Jonas hold a few. They were all still too heavy for him to manage. John went in back and brought out something called a U-Bass (or a Ukulele Bass). It is literally the size of a Ukulele. So small. So light-weight. And it puts out sound just like an electric bass guitar! It was perfectly manageable and Really cool. John hooked it up to an amp and let Jonas play around for a little while. Well, Jonas was hooked and talked me into putting $50 down and putting it on hold for him. All I could think of was all the people who have asked what kind of gift would Jonas like, what could they buy him to help him pass the time in the hospital? What does he want? What can he do? Up until now, I have not been able to give anyone any ideas. So, here you go. If you would like to help purchase this Kala U-Bass for Jonas you may contact Legacy Music in Lee's Summit at (816) 554-7350 or at the link http://www.legacymusic.com/ He has spent the last two days watching YouTube videos all about the U-Bass and watching How-to videos featuring bass riffs. = )
If you would like to donate money to Jonas' fund directly you can do that at
Blue Ridge Bank and Trust
4200 Little Blue Parkway
Independence, MO 64057
Thank you to all the friends who have helped us this past month with meals: The Jordans, Bobals, Everetts, Weibengas, Hubbuchs, Browns, Mrs. Buehre and the Math teachers, Officer Wiley, and all the folks at PLMS who pooled their resources to give us the HyVee gift card. Let me say, after a week in the hospital there is nothing like a home-cooked meal. Yum! Thank you so much. Right now we are all stocked up on food and can probably take a break for a week or two until afterJonas goes back into the hospital again….which is tentatively March 2nd. I will keep you posted.
Thank you to Verlene Kling, The Murphys, the Laird Family, Wendie Trent, Zach Dowdle, Brette, and Nick Wickline. Sometimes it's the little things that count so very much. Thank you for your help.
You may have heard that our friend, Luke Minx, was eliminated from American Idol last week. = ( We were so sad about this, and selfishly hoping to hear his song HOLD ON sung on television. lol. That's okay. We know Luke is going to continue to go far and we wish all the best as he continues his journey to fame. Go Luke!
On another famous note, the Kansas City Royals are heating up to be a winning team this year. Our artist friend, Dave Medin, who painted the amazing renedering of Eric Hosmer and Mike Mousakas for Jonas, checked in with them to see if they are still wearing their green bracelets this year. And YES! They are! I saw a training and interview video on their website and you can see that they are! So, they are already winners in my book. Great guys. We are totally behind behind them this year. Go Royals!!!
Okay. Probably too much information to catch up on this time. = )
I'm looking forward to getting Jonas out of the house today to enjoy this spring-like weather for a while, to get out and see Mr. Blue Sky, so I'd better get going. Thank you all for your understanding, your love and support. We couldn't get by without all of you. = )Send a message
Check this to post a private message - only you and the CarePages website manager will be able to view it.
6 Message(s)
[Unable to display image]About Jonas
Jonas has been suffering from intense facial and headache pain
for approximately two months. His...
Photo Gallery
[Unable to display image]
Invite Others
Invite your friends to visit Jonas's CarePages website.
11 years ago
No comments:
Post a Comment
Note: Only a member of this blog may post a comment.